A Riveting Parent Perspective

May 19, 2019

How do I begin to describe the wonder we named Kaleaha Marie Maldonado? We have been blessed to have her in our lives for 30 years. We were told average life expectancy of a Jacobsen Syndrome child was 2 years old. We were told this by a genetic counselor when she was 3 years old. That pretty much sums up the information from 1970 we had until Kaleaha was 5 years old.


Around this time, I learned of the human Genome Project: The main goals of the Human Genome Project were to provide a complete and accurate sequence of the 3 billion DNA base pairs that make up the human genome and to find all of the estimated 20,000 to 25,000 human genes.


How did this affect us? Thirty-five families from all over the USA agreed to meet at Southwestern University in Dallas Texas. It was going to be a costly trip, so we needed help. A wonderful radio show team called The Dog House the hosts JV (Jeff Vandergrift) and Elvis (Dan Lay) helped us out by doing a fundraiser. JV swan from Alcatraz Island to pier 39. JV did it! His team and listeners Raise enough money and got us to Dallas Texas.


We all met there, and that evolved into the 11Q R&R USA group. You can learn more about that by looking up 11qusa.org. That was the beginning of a parental community that help me navigate the rest of Kaleaha’s educational years. I learned about IEPs and different types of programs to request assistance for.


Kaleaha’s educational learning started with regional center programs like early intervention programs. She had to learn sign language at 1st since she couldn’t verbalize well until after age 3. She was having multiple ear infections, and it took until this age to get her treatment to remove fluid from behind her ears to allow her to hear our voices. Prior to this her hearing was as if she was underwater.


Kaleaha continued from 18 months all the way through 22 years old in the public education programs. After the age of 22 we had a few special day programs that we tried out for adults. This is where most of our difficulties began, we tried the various programs that would allow a 1:1 aid to assist Kaleaha. After trying the multitude of adult special day programs that were available in our area. I was pretty much ready to give up.


We switched Kaleaha to the Independent Living Skills program known as ILS. This worked out well for a little while a couple of years in fact. Then we ran into difficulty with staffing so now we started using different companies. We always ran into the same problem staffing. It was never consistent, and this seriously affected Kaleaha’s mental and cognitive abilities, severely triggering her negative autistic tendencies.


We were incorporating ABA Therapies at the same time as using the ILS services, so we were able to hunker down refocus and bring her out of the cycle. Then we started looking for new programming. With a referral we visited College of Adaptive Arts. We visited this campus. We were skeptical at first about its functionality with an individual who required a 1:1 aide.


Kaleaha’s ILS service provider thought it was worth a try she was very impressed with the progress she saw with her other clients. My fear held me back for a little bit, but I really wanted to get Kaleaha into a program that would provide her with more normalcy like she had throughout her previous educational years. I thought, “Well let’s give this a try.”


We selected some courses and arranged various caregivers. Kaleaha started her first day at College of Adaptive Arts. It took a little bit to find her groove but once she did, she took off like a rocket! She started participating in programs that got her back out into the community. Classes that rekindled her love with cheerleading. Reading and speech have become new interests for her. She participated and several events and her collegiate career has been on a fast track at lightning speeds ever since.


As a family, we do not believe Kaleaha would have accomplished the amount of success and overcome the many hurdles that she overcome had not been for the staff and programing at the College of Adaptive Arts. They have formatted a program that seeks out abilities and applies the knowledge to format a curriculum that allows individuals with different abilities to prosper and shine like the superstars they are.


Kaleaha is one of the lucky students to have found the wonderful staff and program that is The College of Adaptive Arts. Please come a visit the program there is nothing to lose, but everything for your student to gain.

 

Where the System Ends, CAA Begins. We Built the College We Couldnt Find. CAA Story #6: Longstanding Supporter Erin B.

By DeAnna Pursai • March 30, 2026
Longtime College of Adaptive Arts supporter and donor Erin Benford has been an integral part of the school since its inception. Erin has been a well-known realtor in the South Bay for nearly twenty years. She currently works for Christie’s International Real Estate Sereno, but prior to that she was a teacher, so she always had a passion for education. After meeting CAA co-founder DeAnna Pursai at a Silicon Valley Chamber of Commerce mixer, the two bonded over their shared similarities of being school teachers and having loved ones with disabilities. Erin’s son Joel had learning disabilities and was diagnosed with Asbergers Syndrome. He is high functioning, so he was able to work in various different jobs before eventually settling in as a valuable assistant at Erin’s real estate business. Working alongside Joel, Erin knew firsthand the importance of creating opportunities for a neurodiverse population. Aside from her family, her real estate business and philanthropy, one of Erin’s biggest passions is sewing. She is the president for the American Sewing Guild’s San Jose chapter which encompasses 5 different bay area counties. The guild is a community service organization and educational group, focusing on garment making, textile arts, quilts, machine embroidery and much more. Erin says she hopes more people will get involved and support organizations like CAA who have no federal funding. “Raindrops make oceans,” said Erin. “If everyone gave just a little, it could do so much.”

Where the System Ends, CAA Begins. We Built the College We couldn't find. CAA Story #5 Kim Rains

By DeAnna Pursai • March 23, 2026
Kimberly was born in May 1978. She was a beautiful baby but something seemed off so testing was done and it was determined that she had Down syndrome. Testing also revealed she had a heart defect with a hole between chambers and a valve that didn’t work properly. This was all new to us. She was doing well so doctors decided to wait to let her grow bigger before doing heart surgery to repair the defects. We waited about 3 years and finally had open heart surgery at Stanford Children’s Hospital. The heart surgery went well but there was scaring below the vocal cords in her air way which required a Tracheostomy Tube below her vocal cords to allow outside air to & from her lungs. The Trach tube required suctioning to remove mucus from her airway and her lungs. But as Kim grew and made friends in the neighborhood and at early intervention school she learned she loved to dance and perform for the family and for an audience. She thrived when dancing in class, when practicing and when performing. She was a regular dancer at the Alice Porter Dance Studio in San Jose. She taught us, her parents, what she could do. We never said “you can’t” or “You won’t”. I would urge parents to use positive words when speaking to their children. She learned sign language to help communicating with others and her teacher. She learned to cover her trach with her finger to force air through her vocal cords to speak out loud. When teaching Kim how to ride a two wheeled bike she had difficulty with balancing. We tried everyday for a long period of time. We eventually found a three wheeled recumbent bicycle. She could ride that bike right away, and loved it. With her medical issues, we ended up with a trip to see a specialist in Salt Lake City, Utah and several trips to Cincinnati, Ohio. Dr. John Langdon Haydon Down (1828 – 1896) was a British physician well known for his work & description of the genetic condition “Down syndrome” which he originally classified in 1862. He is also known for his work in social medicine and as a pioneer in the care of mentally disabled patients. It is too bad he didn’t have a different last name or a different way to identify the syndrome. For many of our children there is so much more “Up” and not so much “Down”. Kim joined several dance classes and used sign language for the church choir. Once we discovered College of Adaptive Arts there were several classes Kim wanted to take part in. She loved her new friends and brought several existing friends to join her in classes. She thrived in dancing, acting, practicing and learning new things. She led practice sessions at various times in several classes. The College of Adaptive Arts has been a great resource for Kimberly and for us to help and enable Kim to learn, grow and thrive in many areas. She loved to perform in public and on stage. CAA offers many types of learning scenarios and learning environments. It can be good to consider which classes are available and join those that could turn out great for your child. The sky is the limit. The College of Adaptive Arts is a lifelong learning environment. Thank you to Pam and DeAnna for your vision and for your follow-through. Thank you to all the current leaders for their work and dedication. CAA has been a blessing to us in so many ways.

Where the System Ends, CAA Begins. We Built the College We Couldn't Find. CAA Story #4: Professor Danie Weaver.

By DeAnna Pursai • March 16, 2026
Danielle Weaver was a beloved Professor, Director of the School of Communications, and Scheduling Manager at College of Adaptive Arts for the past 13 years. She was a shining light and constant source of positivity, joy, and connection at our college. Danie joined CAA’s team soon after she watched her sister perform a CAA puppet show at Abilities Expo in downtown San Jose. The smile, joy, and encouragement she gave her sister made her a natural fit to be a professor at College of Adaptive Arts. Danie started teaching classes with overflowing love and commitment to her beloved Cardinals while we were holding them all over town, without an anchor campus site. She rose quickly to the role of lead professor while helping develop a brand-new School of Communications, and then became the Director of that foundational school of study in 2015. She created one of the most impactful nights in CAA’s history – the inaugural Communications Showcase - held at the Corinthian Center in downtown San Jose. That was such a special night, spent celebrating the abilities of our students and faculty and enjoying the spoken and signed words. She graciously mentored our staff member, Professor Anthony, to take over the role of the directorship of the School of Communications when she embraced our expansion challenges, providing cornerstone contributions through additional managerial roles. Danie will be forever remembered and celebrated for her kind spirit, her acknowledgement to "Always Honor the Introverts," her calm, non-judgmental demeanor, and the grace she extended to everyone. It was almost impossible not to be put in a good mood around Professor Danie – she just radiated joy, faith, and hope. She would often say that if you walked through her classroom, you might be inserted into a poem or story with the students. We also fondly retain her passions for fantasy tales and all things Disney. We could always look forward to enjoying such themes together in shared class experiences and personal conversations. Danie was an accomplished author and poet who had published her own book back book, Catching Teardrops – a personal collection of poetry created during and about her journey with cancer just one year after her marriage. We lost her way too soon from this disease at way too early of an age. She impacted so many lives and was a true 'Mountain Mover' within her school and community. She will forever remain a beloved and cherished core member of our College of Adaptive Arts Super Staff.

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